| Joined: Oct 2012 Posts: 6 Member | OP Member Joined: Oct 2012 Posts: 6 | Has anybody had a positive survival outcome after having positive bone margins after mandibulectomy for stage 4 ssc? If so, can you tell me what treatment protocal was used? for example, rads/ Erbitux, rads/chemo? Thanks, P.
Stage 4 mandibular/alveolar ridge/lateral tongue Oct 2012. Left mandibulectomy,partial glossectomy and reconstruction of floor of mouth,mandible. Now have positive anterior margin of bone and some positive margins of soft tissue.
| | | | Joined: Dec 2010 Posts: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,264 Likes: 5 | To be honest I'm not sure - so you've had the surgery - there are still positive margins - i would push for radiation, and a combination of chemo ( Erbitux, and cisplatin). If your cancer is HPV related - Erbitux may not be necessary - but you should definitely have rads and chemo. Erbitux is shown to work better on non HPV cancers. But cisplatin is the gold standard and is effective (as is the older drug carboplatin). If the cancer hasn't metastasized (even if it as actually) then it's worth a shot - there are many stage 4 survivors here. And staging is just a number, as are prognosis percentages - both are a melting pot of people with different medical histories, habits, ages, medical treatments, and differentiations. this is all about you - as you are an individual. Your outcome is specific to you and your story is unique. People with stage one have passed on and people with stage 4 are still around - there are no guarantees - That said - one thing is for certain - no treatment, generally has a 100% mortality rate. Have your drs hit it with both barrels ASAP. Hugs - welcome - and much prayers and luck being sent to you.
Last edited by Cheryld; 01-12-2013 10:02 AM.
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | Joined: Oct 2012 Posts: 6 Member | OP Member Joined: Oct 2012 Posts: 6 | Thank you, exactly the kind of answer i was seeking. Mine is non HPV. Have appt with medical oncologist early next week and want to be more informed before i am given the usual answer of cisplatin for everything.
Stage 4 mandibular/alveolar ridge/lateral tongue Oct 2012. Left mandibulectomy,partial glossectomy and reconstruction of floor of mouth,mandible. Now have positive anterior margin of bone and some positive margins of soft tissue.
| | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 7 | Ive had a mandibulectomy so know how invasive and difficult this type of surgery can be. Recovery can be a very long, painful process.
I would suggest to give yourself the very best chance to beat this, go to a major cancer center ASAP. If you are already at one, then you are ahead of the game. This is a serious problem and requires the top doctors and a whole team based approach to build an effective treatment plan.
The docs will need to hit this hard. Unfortunately another surgery could be part of the treatment plan. Rads with chemo will probably be included as well. Its not easy but it can be done so dont give up. Take care of this right away to give yourself the very best chances for success.
Best wishes!!! ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | | | Joined: Dec 2010 Posts: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,264 Likes: 5 | Glad I could help - others will pipe up too. One thing Erbitux should be used in conjunction with carbo or cisplatin. Recent studies according to the arguments in this board indicate by itself it's not as effective. Apparently. Take care
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | Joined: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 4 | As mentioned, go to a CCC, which may in itself be a 2nd opinion, which is always good to get. Additional radiation Gy may be used in positive margins, LVI, PNI, but not sure about bone margins, which is not invasive, which may not be the same as soft tissue margins, but you have that too. Concurrent Chemo also may be used based on margins, and other factors like tumor size, advanced stage, which yours is. I had positive surgical margins, LVI, and PNI, and searched out my options, changed my treatment center opting for resection of the neck, and HD-IORT, during surgery, which is similar to Brachytherapy, and additional IMRT with concurrent Erbitux, and Taxotere. That's why go to a CCC, get a 2nd opinion. Good luck with everything.
10/09 T1N2bM0 Tonsil 11/09 Taxo Cisp 5-FU, 6 Months Hosp 01/11 35 IMRT 70Gy 7 Wks 06/11 30 HBO 08/11 RND PNI 06/12 SND PNI LVI 08/12 RND Pec Flap IORT 12 Gy 10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux 10/13 SND 10/13 TBO/Angiograph 10/13 RND Carotid Remove IORT 10Gy PNI 12/13 25 Protons 50Gy 6 Wks Carbo 11/14 All Teeth Extract 30 HBO 03/15 Sequestromy Buccal Flap ORN 09/16 Mandibulectomy Fib Flap Sternotomy 04/17 Regraft hypergranulation Donor Site 06/17 Heart Attack Stent 02/19 Finally Cancer Free Took 10 yrs
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